Waitng Game

It is no game truly, but a lesson in utter frustration.I do not know what any of us expected Hospice to be able to do, but it does seem once again that they have little part to play in this game. Mary is not willing to take even the liquid drugs, morphine and ativan, that could at least ease her into the eternal sleep. No, no one is trying to kill her, just make certain she is not in any kind of pain or anxiety. Due to her failure to understand her own illness- even acknowledge she has one- she will accept no help. I am sorry for my father, who has finally come to terms, I think, with exactly where this is going. He has to be frustrated with Mary not eating, staying in bed all the time, and not taking any meds of any kind. This is the way it goes, unless one is "lucky" enough to go out quickly.

I had a bit of a conflict with dad the other night, right after he received the drugs from the Hospice people. He didn't know what they were for or how to give them to her, and above all whether he would be able to give them to her anyway. No one else would be able to. Sandy did try the next day, as well as bring dad all kinds of reading to help him interprete Mary's needs. While it helped him feel better prepared, it all ends up being pointless. Mary will not take anything, period.

A question of a patient's right to choose hovered in our conversation. I started to wonder if this is the reason we can choose to put down an animal but insist on trying to sustain a human life out of reason. At least dad knows not to try to keep Mary on forced life support. He doesn't want her to die, to lose his wife of 29 years, but he also doesn't want her to suffer. Fear and stress would be the center of her world if any machines were attached to her right now. If she goes into a coma, always a possiblity, then monitors will be necessary to some extent. I know I sound morbid to those who fear dying, but I am hoping that one night, when they have gone to sleep holding hands, she will just slip away. I believe in the right to dignity, and that would be the best for hers.

This feeling of utter helplessness kind of floats over all involved here. Other than being there to let Dad get out of the house for small errands, or just to have a break, is about all we can do now. We have done all that was open to us, and it feels like so little. Coming from a family of people who need to DO to feel they have not failed, do something, anything, ....this is a true test of spirit. I personally am very frustrated.

The next step- making sure dad can shake loose of the bind he has been in now for months, very nearly alone- cannot happen until we have an end. I think that's what I am waiting on. To rally there for dad. make sure he knows its okay to go on living...to help him part with Mary's things, clothes and such, ...to help him find new goals. I went thru my own version of hell taking care of my mom's world, virtually alone. I will not let my father do that, even though I know him well enough. He will put on the brave face, the ever-stalward Colonel, and keep his pain and loss to himself. he and I are much alike- unable to be dependant on others most of the time. We learned to stand on our own in this life. Anything else is weakness.

Yeah, I know in my heart that isn't true, but training can be a hard thing to put aside, and he's got nearly forty years more of than on me.

*sigh*

I feel rather useless today, as far as this is concerned, so pardon if I go take some Aleve, and try to do some mundane chores. At least the day won't feel like a total waste.